Typical reactions to limb loss and replacement from the perspective of the child, adult and elderly

Although prosthetic components for children and adults are mechanically similar, the overall design of the prosthesis is modified according to the needs of the individual. In addition, the emotional aspect of limb loss varies during the various stages of life. This article will highlight some of the typical reactions to limb loss and replacement from the perspective of the child, adult and elder. There is little doubt that children who are born with limb differences have a much different experience than the child who loses an arm or leg. The child born with a limb missing has not really "lost" anything; the child simply starts life with a different physical reality. The loss is actually felt by the family of the child, whose members are keenly aware of any limb difference and are often extremely anxious about the impact that it will have on the child's future. At this crucial time, contact with a support group composed of parents and older children who have experienced the same issues can be incredibly helpful in calming fears, and accepting the likelihood of an excellent outcome. It is in this setting that peer support finds some of its greatest benefits.

From a rehabilitation standpoint, there is no universal consensus regarding whether to fit a child with upper extremity limb difference with prosthetic devices and if so, which type is to be recommended. Space in this article does not permit a full discussion of this important area but you can refer to the Fall 1995 issue of InMotion magazine for more information. (This may be obtained by calling the Amputee Coalition.) It is important that the parents be given a full, candid discussion of the advantages and disadvantages of all the options and then supported as they make the difficult decisions required.

It is fortunate that whatever the early decision, it is not irrevocable as a different decision can be made at a later date.

Lower limb prosthetic fitting is much less controversial. The initial prosthetic leg is usually provided when the child is beginning to try to pull up and stand, at or before one year of age. The early prostheses are usually relatively simple and easy for the parent to apply, emphasizing stability, light weight, and comfort. Special features to accommodate growth of the child are useful, along with careful attention to maintaining the fit of the socket despite the rapid changes in the residual limb.

The most important reality is to enhance the child's sense of self-worth and to support his/her efforts to explore, grow and develop like all children.

The very young child with an acquired amputation experiences the trauma of the surgery but does not have as many of the social issues that older children must face when they undergo amputation. The older child who undergoes amputation will often recognize the social bias against people who do not fit the "average" pattern. Parents often feel guilty, especially if an accident is involved. If the amputation was necessitated by a malignant tumor, fears of death are very real and need to be dealt with in an effective manner. Open discussion, with a positive outlook, regarding the amputation and its subsequent management should be encouraged. If a prosthetic device is appropriate, encourage the child to participate in the design as much as possible. A child may really enjoy selecting a favorite cartoon character or color to be incorporated into the design of the new prosthesis.

Most children function extremely well with a prosthesis, usually better than an adult with similar loss. Their enthusiasm, energy levels and flexibility are all very positive characteristics favoring use of a prosthesis. From a design standpoint there are three essential criteria for any growing child's prosthesis: durability in play activities, adjustability for growth, and ease of use. Simple, rugged designs often resist the dirt and impacts inherent in healthy childhood better than more complex options.

The teen years are turbulent for many young people in our culture, with increasing maturity and sexual pressures as major life events to master. Loss of a limb adds another level of complexity to an already chaotic period.

Adolescence is a time when opinions and preferences change radically, often overnight. Increasing concern with one's physical appearance is typical and most teens become more interested in the aesthetic values of a prosthesis at this time. Those who saw no need for an artificial arm in childhood may suddenly desire a fitting with the most lifelike prosthesis available. Paradoxically, those who wore a prosthesis faithfully and enthusiastically for years may suddenly reject it as "phony" and insist that the world accept them "as is."

The best approach to these years is to expect change (and surprises) and to talk directly and respectfully to the teen about her/his views on these prosthetic issues. The savvy prosthetist will invite the interested teen to have a large say in the specific features of the prosthesis since this fosters independence and encourages cooperation.

From a design standpoint, the adolescent will have a broad variety of needs and may use more than one prosthesis as a result. Converting an older, nearly worn out prosthesis to a "mud-n-water" tolerant version is common. Some teens will have the need for specific sports prostheses. In general, as the child matures the complexity of the prosthesis increases. The goal is to never allow prosthetic limitations to restrict the teen's activities. A desire for special patterns or colors to be incorporated into the prosthesis is common and easily accommodated. Others will insist the limb be as inconspicuous as possible and develop fastidious cleanliness to keep it looking immaculate. The challenge is to meet the individual needs of each individual teen as much as possible.

For the adult, amputation is a personal crisis and often a family crisis as well. Each person reacts somewhat differently depending on the meaning that the amputation plays in her/his life. Most adults feel guilty about an amputation regardless of the cause. The opportunity to meet with others who have successfully coped with amputation in a support group setting can be extremely valuable in making this tremendous adjustment.

Fear of the unknown is one of the most common responses to amputation. For this reason, early introduction to appropriate prosthetic care is generally recommended. Meeting the prosthetist, asking questions, researching the possibilities and gaining confidence in the potential for success are very important to recovery.

From a design standpoint, the vocational and avocational interests of the amputee usually determine the details of the prosthesis. Those who do rough, strenuous work may prefer the sturdiness of an exoskeletal prosthesis with its hard outer shell to the greater aesthetic value but reduced durability of an endoskeletal prosthesis with a soft, protective cover. Others may prefer the rugged look of the bare endoskeletal framework. Sophisticated joints, high-energy components, and complex systems may require more money to purchase and more maintenance to keep working. Usually, the more active the individual, the more sophisticated and expensive the componentry required. Always remember, however, that a comfortable socket and accurate alignment are paramount in any prosthetic system. For some individuals whose activities subject the prosthesis to very high stresses, a simple but durable prosthesis may be preferred because it requires less maintenance and repair than more complicated designs.

Senior amputees certainly are very numerous, with most requiring the amputation due to diabetes and/or vascular disease. Often the amputation is the culmination of months of treatment, which leaves the person weak and debilitated. Sometimes the amputation brings relief from intractable pain. Sometimes the loss of the limb follows a period of general physical and mental decline that had an immense adverse impact on the amputee and his/her family.

It is impossible to predict which senior amputee will be able to use a prosthesis. Recent studies have shown as many as 75% of older leg amputees will become effective prosthetic users if given adequate care and training. Starting rehabilitation quickly prevents further deterioration of the health and stamina of the older person. For this reason it is important to begin prosthetic fitting as soon as feasible after the amputation. Such early ambulation has been well demonstrated to decrease the debilitating effects of prolonged inactivity, allay fears of immobilization and dependency, and improve the quality and length of life for the amputee.

Prostheses for older amputees run the gamut of available technology. The golfer in his 70s who lost a leg due to vascular disease may return to golf and benefit from a lightweight modern prosthesis with variable cadence knee and dynamic response foot. The sedentary older amputee may avoid placement in a nursing home by mastering a simple, lightweight prosthesis with secure and easy suspension and stable joints. The technical details of the prosthesis should be determined by the specific needs and capacities of each individual amputee, not some arbitrary prescription based on age or diagnosis. The goal should be to increase both the quality of life and the degree of independence for the older amputee.

Although the physical experience of amputation and rehabilitation are similar regardless of the age at which amputation occurs, the impact varies tremendously based on many factors. One's stage in life influences both the nature of the experience and the overall outcome. Keeping such factors in mind may assist the individual and concerned family members in coping with the impact of limb amputation or congenital limb absence.